Still not 100% sure that it's MBP, but something's not right

Not all physical disabilities are impossible to ignore, sadly, though you sound like yours is well-recognised and doesn't get as much nonsense attached as some of the others. Do you know, I used to have a friend whose brother was quadriplegic following an accident, and at one point the poor man had four social workers walking around his wheelchair, saying, "Are you sure you can't walk? How about if there was a fire?"

I've got a perfectly practical attitude towards treatments as well. It doesn't seem to make a difference, it really boils down to whether or not the doctor is willing to work with a very difficult medical condition. If they're not, they they won't listen to you no matter how reasonable you are. Though I'm sure that things turn out worse for the people who have this sort of illness *and* a bad attitude towards treatment. I encountered one guy who practically wanted to sue his local hospital for calling it CFS rather than ME, he'd apparently been ranting about it when they took him into A&E. If you're not familiar with the politics of that one, both names are commonly used, though patients tend to prefer ME while doctors are more likely to use CFS. It is the kind of point the ME organisations campaign about occasionally, but it is absolutely not worth fussing about when you're accessing medical treatment. I reckon that guy really messed up his medical care as a result.